Wait Times for Autism Services Cut in Half without Adding Staff

December 12, 2013
By Rachel Kremen

People with autism spectrum disorders (ASD) spend a lot of time waiting: waiting for a diagnosis, waiting for therapeutic services, or waiting to see a doctor about medication. Participants in the Collaborative to Improve Care for Children with Autism Spectrum Disorder, a quality improvement collaboration led by NICHQ and the Autism Speaks Autism Treatment Network (AS ATN) / Autism Intervention Research Network on Physical Health (AIR-P), looked closely at how patients with the neurodevelopmental disorder move through the system.

With coaching from an external expert on access to care, teams found ways to significantly reduce waiting times by applying quality improvement methods to collect wait time data and make informed changes based on the information. The two hospitals participating in this work made notable progress.

“With the increasing prevalence of ASD across the country, one of the biggest issues we see today is actually getting access to a provider. Wait times are rising exponentially,” says NICHQ senior project manager Meghan Johnson.

After being referred for services or diagnosis, patients often spend several months on a waitlist before their appointment is even scheduled, then wait several more months to see a professional. Some can wait a year before receiving therapy or medication. This problem isn’t just inconvenient for families: the earlier children with ASD receive intervention, the better their outcomes tend to be.

The team measured and analyzed demand and supply of providers’ time, and activity in relation to delay. “We measure delay as the third next available appointment because it gives us the truest sense of where they have open spaces and real availability exists,” notes June Austin, a consultant with Mark Murray & Associates and coach for the access work. The first and second available appointments might be due to last-minute cancellations and not representative of true delay. Using this data, the organizations were able to identify system imbalances and implement effective change.

Staff at Cincinnati Children’s felt they were short-staffed before they started the improvement project, but after looking at the collected data they discovered they could make big improvements to wait times without hiring. Typically, primary care doctors refer patients to Cincinnati Children’s for a diagnosis of ASD. But patients had to first see a developmental pediatrician at the hospital before they could be evaluated for ASD, and the wait times for developmental pediatricians were several months long. Allowing patients to make appointments for diagnostic testing before seeing the developmental pediatrician decreased the delay from 91 days to 22 days for children between 19 and 36 months old.

Staff at Cincinnati Children’s reduced wait times by being flexible about the type of doctor a patient saw first and combining appointment types in their scheduling system.

“We also learned that we have an enormously complex service delivery system,” says Heather Johnson, staff psychologist and quality improvement lead for the Kelly O'Leary Center for ASD at Cincinnati Children’s. All that complexity reduced access to care. If a timeslot was set-aside for a child between 19 and 36 months old, for example, a scheduler couldn’t fill it with a child age three to five, Johnson explains. The spot would potentially just sit open. By allowing a variety of age groups to be scheduled in a given timeslot, more patients were seen each week and the hospital reduced the overall wait to just 8 days for all of the age groups.

Nationwide Children’s Hospital was also able to reduce its wait times significantly. The hospital had already improved its wait lists for diagnostic appointments, but patients who had received a diagnosis were waiting six months for follow-up care because the clinic was always dealing with urgent issues, such as families requesting medication to treat aggressive behaviors.

“When we started mapping out the process, we realized we didn’t have a very good system in place,” says Karen Ratliff-Schaub, medical director of the Child Development Center at Nationwide. “At one point we had more than 100 kids on a wait list for follow-up and we didn’t have a good system in place to do anything about it.”

One of the key elements of Nationwide’s new plan was creating a standard appointment length. Prior to the NICHQ project, some providers were slotting 90 minutes for a particular kind of appointment, while others were setting aside an hour. When the team looked at the data on appointment duration, they found the average length “was slightly over 60 minutes, but wasn’t 90,” says Amy Hess, the Autism Treatment Network Site Coordinator for Nationwide’s Child Development Center. “When we saw the numbers, we made the change to 60-minute appointment slots.”

The quality improvement project also revealed that Nationwide’s providers weren’t in the clinic as often as they’d thought. “One was taking a lot of Mondays off, despite being scheduled in the clinic for only Mondays,” says Ratliff-Schaub. With this knowledge, the clinic is better able to understand and strengthen its service.

With the access project’s analysis as a guide, Nationwide reduced wait times for follow-up appointments from six months to three as of October 2013. Ratliff-Schaub says she and her team will continue using what they learned from the project to make their clinic even more efficient in the future and hope other clinics will see that it is possible to reduce wait time without adding staff.